Fight For Keanu

Hi Rose, this isn’t a question just a personal experience.

My son was born in Hawkes bay hospital in 2016 with a laryngeal cleft, we got to 3 months old and the doctors didn’t know what it was so we were sent up to Auckland’s starship children’s hospital where he was put through a bunch of tests to find he had this rare cleft. However a surgeon there did state they hadn’t come across many laryngeal clefts but they would give it a go to repair it. He was tube fed for the first 8 months of his life with the conversation of a Mickey button being put in place if he wasn’t able to successfully drink from a bottle or eat properly. He’s 5 now, we struggle a bit through winter and he also has asthma and other breathing issues so we are still under the care of starship currently with having to go back every few months, but his quality of life is the same as my “healthy” children. With the exception of him needing medications daily for reflux and having to watch what he eats as some foods can cause issues still. I don’t think this is a life sentence I think you need another opinion? Dr Collin barber is the surgeon that repaired my sons laryngeal cleft and he was an amazing surgeon.

I wish you the best in getting what baby deserves! ♥️

So sorry for what u guys are going through and I hope u get the best out come for baby and family

Have the doctors offered to use a feeding tube the same they use for prem babies so they can still get mum's milk or formula not sure if that would be possible through the nose with the cleft but I think there is one that can be used through the stomach as remember seeing a documentary on a young nz boy a last year or the year before who has a feeding tube through the stomach

Fight for this don't take no for an answer push for them to converse with overseas docs make sure u sit in with them get as much info as u can